Propecia and Peyronie's Disease

[Centerre-Guy]

Wuffer - the link between finasteride and peyronies is not old news so you're not going to find many completed studies, but the FDA is investigating and studies are being conducted on a multitude of levels at this time. Many people believe that the lower testosterone which is a result of taking finasteride is at the root of the problem http://www.ncbi.nlm.nih.gov/pubmed/...med_ResultsPanel.Pubmed_RVDocSum&ordinalpos=6.

Most men who suffer from Peyronies do not seek treatment because they are (1) embarrassed to discuss it with anyone and (2) there is no cure for the condition, so they figure there's no point to it. Now that it is becoming more widely known of a link between peyronies and finasteride, many of these men suffering from peyronies who have taken finasteride are making themselves known. I am a member of several peyronies disease internet groups and they are all buzzing about the connection because there is a large percentage of men who are members that have taken or are taking either propecia or finasteride. So sit tight because you'll be reading more about the connection as it is investigated further.

Merck recently took down the propecia.com website to update the side effect information as a result of the multitude of lawsuits that are being filed by men who have taken the drug. They also haven't made any comment about it. A little strange?? Maybe they foresee something??

Through recent media coverage, many men are just becoming aware of Propecia’s safety issues. With no official guidance available from the FDA or Merck, concerned readers continue to email the Examiner searching for answers on the drug’s severe side effects.

Several readers have called attention to a related side effect that has left numerous men with permanent scar tissue where they’d wish for it least: inside their most private of parts. That, in turn, causes curvature of the penis, which one reader wrote “makes sexual function impossible at worst and painful at best.â€

Known as Peyronie’s (pa-roNEEZ) disease, MayoClinic.com reports the condition “can prevent a man from having sex or may make it difficult to get or maintain an erection (erectile dysfunction). For many men, Peyronie’s disease also causes stress and anxiety.†Surgery is recommended if the curvature and pain are severe enough to prevent sexual intercourse.

As devastating as these revelations are, untold thousands of men that were prescribed Propecia still have no idea that they may be at risk. Without any updated FDA guidance, many unknowing doctors continue to prescribe Propecia unaware of the drug’s irreversible side effects, since that information was not contained in the drug’s original safety literature.

http://www.examiner.com/courts-in-b...opecia-s-link-to-permanent-sexual-dysfunction

Last Spring, a study published in the Journal of Sexual Medicine found that at men who take finasteride may develop an ongoing loss of libido and orgasm, even after they go off the medication. The study looked at 71 men who reported such side effects. The average duration of persistent sexual side effects was 40 months after they stopped taking finasteride. About 20 percent of the men still had side effects more than six years after stopping finasteride.

In 2008, Merck changed the Propecia label in Sweden to warn that the drug could lead to permanent erectile dysfunction. Similar changes were made to the labels in the U.K. and Italy in 2009 and 2010. But Merck didn’t make changes to the U.S. label until last year, and even then it didn’t warn that sexual side effects could persist after men stopped taking Propecia.

http://www.newsinferno.com/pharmaceuticals/merck-takes-down-propecia-site-as-lawsuits-mount/35598

Not even considering the Peyronies element, if you want to continue to take a drug with a black box warning with the kind of sexual side effects that finasteride has been proven to cause, go right ahead. However, you may want to think about stocking up because as more lawsuits are filed, Merck is going to realize the liability isn't going to be worth the profit. And whatever would make you think that finasteride 5mg wouldn't be pulled as well escapes me considering Propecia is simply finasteride 1mg. Before Vioxx (another drug brought to you by Merck) was pulled off the market, there were people defending it, saying "where's the proof?" etc., and it eventually came. It takes many years for a drug to be able to be approved by the FDA, so pulling a drug off the market isn't something that happens overnight. Bookmark this post and put it on your calendar to revisit in a year.

I will be signing off from this website now. I realize this website is about hair loss and that the majority of men coming here are desperately seeking a cure, so much so, I don't think people want to hear the negatives about something like Propecia. You scream for sources and when I give them to you, you discount them for one reason or another. I do believe you will be hearing a lot more about the dangers of propecia/finasteride (they are the same) in the upcoming months and that the drug will ultimately be pulled from the market because as more is revealed and made known, most men won't want to take the chance of trading in their ability to have enjoyable sex for a full head of hair (which frankly, I don't think propecia ever really gave anyone -- perhaps helped save what you have the way mioxidil does at best). If one person reading this post has been able to save themselves from experiencing permanent sexual side effects by tossing their propecia/finasteride, then the time it took me to write these posts was well worth it. I just don't have it in me to continue to debate people who aren't willing to look beyond their own situation. It's true that not all men suffer from the side effects of the drug, but to dismiss the actual cases as being of such a low number overall (2% is just the number of REPORTED cases, and we all know the actual number is way more) and/or claiming the argument against the drug is "emotionally based" does a disservice to this forum.

 

[Wuffer]

Just to start out with here, I don’t want anything to be misconstrued; I personally do believe finasteride CAN cause persistent symptoms, including Peyronie’s. I have not reached this conclusion on any substantial amount of data, but purely on anecdotal reports. This is a personal conclusion I have reached, and does not fit in with my objective, scientific-minded interpretation of the data. This might not make sense to you, but maybe it does.

You are correct; lower Testosterone levels could contribute to the development of Peyronie’s disease. However, Finasteride is not known to reduce Testosterone levels. Quite the opposite; it is known to raise T to some degree. People have claimed Finasteride lowered their T levels, but I have yet to see any data that supports this. I think you may be confused that people suffer from symptoms that mimic low T levels (hypogonadism) but their T levels are often well within normal ranges. Even for those outside normal ranges, there are rarely baseline results to actually compare them with. Additional factors such as lifestyle changes may also affect T levels quite significantly. It is possible finasteride could cause some sort of physiological resistance to T, but again, I’ve not seen anything that supports these types of theories. Anecdotal reports, including but not limited to those on Propeciahelp cannot be used as accurate data. There are simply too many variables involved, most notably, lack of baseline values. This highlights the importance of getting full hormonal tests done BEFORE taking finasteride.

I don’t understand why you mention Merck taking down the Propecia website. This is actually quite a standard practice for any company undergoing lawsuits; remove, review and revise the marketing material to ensure nothing can be used against them. The website is back up right now, and aside from the layout, nothing has changed save the changes in side effects to reflect their product insert. I don’t find this the least bit strange or unexpected. It certainly doesn’t indicate Merck is admitting guilt.

The examiner webpage you link to simply consists of conspiracy theory-esque speculation and anecdotal reports. John Peige clearly has a strong bias against Finasteride and Merck, as he has over a dozen articles against Finasteride. Again, anecdotal reports, even in a large quantity, do not imply any sort of causation.

Finasteride does not currently have a black box warning, where did you get this information from?

 

[Erick.]

"correlation does not imply causation" ??? something tells me I could show you a bunch of studies and you'd still not find the evidence adequate. I'm not going to labor the point ad nauseam with you because it's quite clear you are (1) someone who has not suffered from any side effects of finasteride and (2) you don't believe that there is a connection.

What I believe is irrelevant, as is what you believe.

If you were able to provide a double blind placebo controlled study that showed higher incidence of Peyronie's Disease for men using Finasteride then that would go a long way to supporting your claims, but such a study does not exist.

The fact that you started using Finasteride then developed Peyronie's Disease some time later means absolutely nothing. From what I can tell, the usual cause of the condition is physical injury to the penis.

 

[ghg]

Have this and it isn't fun. My penis was slightly curved before finasteride, but now it's curved A LOT, especially when erect. It bends down and left.

And no, no physical injury to penis.

 

[Prop]

for how long did u take propecia?

 

[ghg]

for how long did u take propecia?

I've been on for 2 periods, first 1.5 yrs and then like 4 months. I was too desperate to keep my hair so I just ignored all the sides.

 

[Prop]

i was stupid to believe blindly to my dermatologist, he never told me about possibility of persistent sides

however pfs studies are ongoing, soon we will see something

 

[james1980]

Ok. I'm quite new to this whole forum thing, but after taking Finasteride for 6 months I started to notice pain upon getting an erection - it almost felt like a bruising just located towards the head of my penis, and if I flexed my penis the pain would increase. It certainly wan't unbearable by any means, but very distracting, and it was almost a relief to ejaculate just so the pain would go away. I shortly after noticed a small lump on the inside of my penis and a hard, fibrous like clump in the middle of my penis. Sometimes it's hard to know what's 'normal' in there as I for one have never felt my penis for any signs of lumps as intently as I did during this period. It was after having sex a couple of times in one evening that I noticed that I could VISIBLY see a large lump on one side of my penis, at this point I went to the doctor and was diagnosed with Peyronies.

I was pretty mortified, I had never had any kind of impact to my penis and although I knew that it could just pop up spontaneously I wracked my brain to see if there was anything I had done or was doing that could have caused it, or if there was anything I could stop doing to make the condition better. It is at this point that I googled 'Finasteride' and 'Peyronies' and this is one of the first forums I came to. I immediately stopped taking Finsasteride (I was taking 1/4 of a pill each day), and in my mind the link is too strong to deny - I definitely attribute my condition to taking Finasteride.

I partly want to post this because I have had some luck with treating my Peyronies so far - upon initially trawling through this and other forums I became quite depressed about the whole situation. I didn't read a lot of success stories, and I felt pretty doomed to a sub standard or non-existant sex life, recurring erectile difficulties, and a slow disfiguration to my penis. But I guess if people do have success they tend not to be as active on these forums. I just want to put something out there that if I read I would feel like there is hope. To keep it short, this has been my story so far:

After quitting Finasteride (I just STOPPED taking the pills, I didn't lower the dosage or anything)
After a week I noticed that my erection didn't feel as strong as usual, and then a few days later I was unable to get an erection. I also had NO sexual drive. Like I didn't even think about sex, I would try to make myself watch p**rn and I felt nothing. Which is very unusual for me...
I don't know whether this was all psychosomatic, whether all my readings caused this effect or whether my insecurities about my condition played a factor, but regardless this was my experience. I imagined a life with my partner without being able to have sex, and was obviously a little depressed and freaked out.
A week and a half or so after I first noticed my inability to get an erection my erections started to come back again. The relief of knowing that I didn't have permanent loss of erections was pretty awesome. I know a week and a half doesn't sound long, but I really didn't know whether it was permanent or not...!
At this stage there was still the same pain upon getting an erection, and sometimes even a dull ache when I wasn't erect.

The first thing my doctor recommended when he diagnosed me was Vitamin E pills. On further research I noticed that this has been successful with a topical Vitamin E cream. I also read about kegel excercises and that these have been successful as they stimulate blood to that area. So pretty much immediately after diagnosis I began taking a Natural Vitamin E supplement (500 IU) I started taking 2 a day, using a topical Viatmin E oil (910 IU per gram) and massaging it into my penis in the morning and evening focussing on the lump and fibrous tissue followed by kegel exercises (30) after applying and also regularly doing the kegel exercises throughout the day. I also drink a lot of water and go to the gym 3-4 times week, doing a mixture of cardio and weights.

Improvement definitely wasn't immediate, but after several weeks I definitely noticed that the pain during my erection reduced, and I could notice the lump and fibrous mass reduce in size.

Now, after about 15 weeks of this treatment I have no pain during my erection, and the fibrous mass feels like it has almost gone and the lump has significantly reduced in size. My penis unerect initially looked quite bulbous on one side when I first was diagnosed, and now looks normal. I never really noticed that it looked any different erect anyway... although didn't study it too intently...

Anyway, in summary, I do believe Finasteride is pretty evil, and being 34 I really shouldn't have to deal with erectile issues so young. Hair loss can effect your self confidence, but the possible side effects from the alternative really aren't worth risking. And it is possible to heal yourself! Don't focus on the negatives, use the forums to learn about new ways to treat yourself and don't obsess! Stay as healthy as you can, look after yourself and I'm sure you'll improvement!

 

[Oscar66]

@james1980
I just quit finasteride about 3 weeks ago because I had changes to my penis.
They started after about 6 months where there seemed to be a ring around my head, like a wire ring restricting, and there was loss of size.
I reduced to half pills and that seemed to help, but the size of my head was still smaller.

Then in maybe November I noticed quite quickly that an area on the left side right under the head had a "dent", like the tissue was just missing. Painful erections. Some bending to the left.

f***.

So It's mild, and there is curvature, and it's painful. But it's scary. This is scary in that you are DOING PHYSICAL damage to your dick.

So I'm off the finasteride and my hairs have miniaturized and it sucks.

So after two years of finasteride I'm still balding, but now I have a broke dick. Lovely.

I'll try some routines you suggested. POSSIBLY if things improve I might get back on half a pill.